Day 8

Sorry I haven't been writing consistantly. Yesterday, I was flat out exhausted all day. It felt like it took great effort to do the bare minimum of what had to be done at home. I laid down almost the whole day. I feel lucky I don't feel like that everyday. I did still feel clear minded though. At least with all of the laying around I did, I was able to watch the movie "The Ugly Truth." The storyline was predictable, but I thought it was very funny. Quite a bit on the raunchy side.

Today, I'm feeling less fatigued, but I've been dizzy all day. Boosting my salt intake helped a little. At least I'm not in any pain. There is always something to be thankful for.

Until tomorrow...

Linda

Day 7

I woke up feeling alert and brain fog free today! I must be low in glutathione as my doctor mentioned, because I definitely feel a difference in how my brain feels since I started using the skin cream last Friday. I have not needed any caffeine for 2 days now. I hope it lasts!

I didn’t write yesterday because I was having a pity party for myself. I woke up feeling very sad, and I just couldn’t kick it for half of the day. I try to be as positive as I can, but some days I just feel sorry for myself. I guess that’s par for the course when you have a chronic illness. My husband and something funny I saw on TV finally helped me break out of it.

I used to have pain every day, shoulder, neck, and sciatic pain. At first I was using Diclofenac twice a day and Amitriptyline at night. The combo worked okay for me, but I would still get severe menstrual cramps. The kind that doesn’t respond to anything. It so happened a friend of mine was a Mona Vie distributor, and she gave me a bottle of Mona Vie Active to try. I was very skeptical, but I tried it anyway. I’ve been using it over a year now, and I am virtually pain free. I no longer need Diclofenac, and reduced my Amitriptyline dose by half. I understand that everyone’s bodies are different, and not everyone has the same success with using the same supplements. If you still have chronic pain, please keep looking for answers. Pain control is important to overall well being, and for getting better sleep. Better sleep allows your body to heal.

I’m keeping it short, because I have to get some things done today. Have a good week.

Until tomorrow…
Linda

Day 6

Hi There. I’m sorry I could not write my blog yesterday. It was a pretty energy draining morning, and had nothing left to give in the afternoon and evening. Yesterday, I had to go out of town for blood work because the lab close to my house could not get a time sensitive test to the lab soon enough. I had to fast the night before. A little rough for me in the morning because I wake up with low blood sugar, and dehydrated. Normally, I have to eat something within an hour of waking up, and then every 3 hours after that. If I don’t I feel very ill. I woke up at 7 am, and rolled out the door 20 minutes later. Just in time for early morning commute traffic. It was hard to focus, but at least I wasn’t feeling fuzzy or dizzy. Just hungry and tired!

The commute was already challenging enough for me, but the directions to the lab I got from their website were wrong. I didn’t bring my portable GPS because I didn’t think I’d need it. At least I had the labs phone number. I called up and I told them the exact street and cross street I was at, and they told me, I needed to turn around, and go the other way because I drove too far. Well, it turns out I had not driven far enough. After I realized this I wanted to make a u-turn, but the next 3 intersections had no u-turn signs. After a second phone call to the lab, I finally got there at 8:50 am. I didn’t have to wait long, and went to get my blood drawn. I didn’t know just how much blood they were taking, but it was a lot. I almost fainted because of blood loss when they were on my last 4 vials. They had me lie down for quite awhile, and drink some water. That is a first. I’ve never almost fainted from having my blood drawn.

After I was done, (10 vials in all) the technician told me in the future, if I am going to have that much blood drawn, I should get it done laying down. I will keep that in mind! Luckily for me, the medical center where the lab was located, there was a pharmacy. I got a bottle of Gatorade and had that and a snack bar in the car. I called my husband from my car, and that is when I got weepy. The whole situation was draining (literally and figuratively) and not having eaten yet, just put me over the top. After I finished my snack, and dried my face, I drove home. All in all, it was a 3.5 hour event. I ate when I got home, and took a nap for 2 hours. I figure I must have been tired from losing all of that blood.

Yesterday my glutathione topical cream showed up. Many with CFS are low on this substance, but the genetic test to prove this is more expensive than trying the cream to see if it helps with fatigue. That and my levels need to be raised because I am shortly going to be going a urine test showing levels of lead and mercury in the system, and the test depletes this substance further.

Remember when I mentioned B12 shots and not being sure if I could do them myself? My husband gave one to me last night. I told him to just keep in mind, that I’m not a dart board. On the 3rd attempt, it was a success. He’s a great guy, and I’m lucky to have him in my life. So I’ll be getting 2 shots (2 ccs each) per week of B12.
Today, I almost felt alert when I woke up. So I did some light cleaning and laundry and made breakfast for the hubby. We are going to go out and about to run a few errands this weekend. I’m looking forward to it.

Until tomorrow…
Linda

Day 5

Hello All. Today’s blog will be a little short. Being that my brain is clearer today, I have a lot to do around here. Like reading the handouts from my new doctor!

Today I had a dress rehearsal for my blood drawing for blood tests. I say dress rehearsal because after telling the technician one of the tests is time sensitive, I found out that office I went to could not accommodate my needs. So tomorrow morning I get to drive to another city (45 minutes away) and get it done.

I also found out today that I will be receiving vitamin B12 and a bunch of syringes. Hmmm…I’ve been needle phobic most of my life, but over time I have become desensitized to being poked and prodded by others. The thought of trying to give one to myself? That makes me feel nauseous. Maybe I can do it, I don’t know.
Today I started part of my new protocol. The aim of it is to get my gut back to normal. I’m taking enzymes to break down the biofilm in my intestines where the bad organisms live, while taking probiotics and prebiotics to help colonize it with good organisms. Science or science fiction? We’ll see how I feel after 3 months of this. I’m also going to make my first green smoothie today recommended by my doctor. I’ll be using baby spinach, water and some fruit, and adding some flax seed meal. Sounds yummy doesn’t it?

Until tomorrow…
Linda

Day 4

Good morning! (Almost afternoon here.) I’m feeling a little dizzy and stumbling around like I’ve had too much to drink. My cats look at me cautiously. They know on morning like this, they are safer to stay out of my path. I had my appointment with my new CFS specialist, Dr. Michael Powell. It was a long 5 hour day for me including the drive both ways, and I missed lunch, so I wasn’t feeling the greatest when I came home. Overall I think the appointment went very well.

I had an easy rapport with him, unlike many other doctors I’ve met. I felt comfortable talking with him, and felt like I’ve known him for awhile. He is a medical doctor, who believes in using natural substances for treatments whenever possible. He is very intelligent and when he speaks to you scientifically, you can feel that he has a true interest this illness and in treating his patients.
I was feeling pretty fuzzy by the time I got to the doctor’s office, and my brain was not able to process a lot of the information it was given. Thankfully, he gave me handouts to read when I am feeling a little clearer. Without getting into all of the scientific jargon here, his theory is that people with CFS and/or FM are in a “walking hibernation.” This is as a result of certain signals being sent to that person’s body. If you can reverse the signals, you can “wake them up.” Well, that would explain why I feel so much worse during the fall and winter! He reverses it with the SHINES protocol I wrote about previously.

A couple of things of interest to me, he gave me a B12 shot before I left the office. It took me about 2 hours before I noticed its affect. I could use one of those every day! After getting one of those I didn’t feel as mentally fatigued. Unfortunately, the effect did not last long. I was tested for Fibromyalgia. He pressed on various points on my body and had me rate the pain I felt on a scale of 1-10, he drops the 1s and 2s and adds up the rest to come up with a score. I was 3 points shy of being classified having FM. This doctor also believes CFS and FM are really the same illness, but you get diagnosed with one, the other, or both depending on your symptoms. I am going to get some more blood work done tomorrow, and for the first time being tested for various viruses I have never been tested for before like Epstein Barr. I will also be tested for Natural Killer Cell function and Vitamin D levels.

I am keeping a positive frame of mind. I believe in Dr. Powell’s ability to heal me, and I believe in my body’s ability to heal itself!

Until tomorrow…
Linda

Day 3

Today’s blog will be shorter as I have my first appointment with a new CFS specialist I found. I’ve been through a number of doctors in the past, and most of them have not been very understanding when it comes to my condition. I’m sure many of you can relate to that. It’s too tiring to keep looking for new doctors and go through the whole history with them. That’s the reason I stay with my current primary care physician. He literally threw his hands up in the air and said, “if your MRI (on my brain) comes back normal, I don’t know what is wrong with you.” So I went back to him with I list of tests I found on the CFIDS site done to rule out others illnesses. I went to the only neurologist in town for the MRI results and interpretation. She said I don’t have MS lesions, but I have “spots on my brain.” I asked what she means by that and she could not explain. Later on after doing more reading about CFS, finding spots on the brains of people with CFS is very common. Brain damage perhaps from the illness itself? After doing the rest of her neurological exam, she looks at me and says, you have chronic fatigue syndrome. She wrote it on her business card and handed it to me. My doctors gave me no information about the illness. I’m very lucky to have access to the internet and decent skills at researching.

I am still hopeful about today’s appointment. The Dr. Teitlebaum I mentioned in an earlier blog, actually had CFS himself when he was younger, and had to drop out of medical school temporarily. He recovered, went back to medical school, and dedicates his profession to treating people with CFS. He has treatment centers throughout the US. The closest one for me is Las Vegas…a little too far. Dr.Powell, whom I am seeing today, was trained on his SHINE protocol. Shine stands for Supplements, Hormones, Infections, Nutrition, and Exercise. Dr. Powell has added an “S” to the end of it for Stress Management.

I hope to tell you more about how it went tomorrow. Please send positive thoughts my way.

Until tomorrow…
Linda

Day Two

Good morning! I was going to write about something completely different in my blog today than what I wrote instead. In a status update, one of my facebook friends complained about the possibility of universal health care, and hard working Americans being the one to foot the bill. I won’t repeat his exact words, but I felt I needed to respond. At first I thought of posting this on my friend’s wall, but I think there might be a limit on the number of characters you can use. I have included the text of the email between the asterisks below.

**********************************************************************************
I hope this email finds you and your family well. After reading one of your recent status updates, I felt compelled to write to you.

I have been a hardworking American as long as I can remember. It started in school, where I almost always had good grades, graduated 17th out of a class of 535, and even started working while I was in high school. As a college student, I took a full load of courses while working full-time at the bank as a teller. I lived on my own in an apartment. I didn’t make a lot of money, and had to pay for my education, but I was responsible. I was living on pot pies and the cheapest food I could find. I was never late with any bills.

When I moved out to California, I went back to school, and ended up working in the computer field, later on becoming a hard-working inside sales representative. In 2000, my husband and I were living the “American Dream.” We bought a big, beautiful, new house, had new cars, and I myself cleared over $ 80,000 in salary.

Unfortunately, the “American Dream” does not always go as planned. Shortly after in 2001, I was laid off due to restructuring. The company decided to have its inside sales group located in Texas. After being one of the top 3 inside sales reps for the company, and all of the effort I put into my work, all seemed to mean nothing.

I became ill a short time after with Chronic Fatigue Syndrome. Chronic fatigue, pain, muscle weakness, and brain fog are the short list of symptoms. In Chronic Fatigue Syndrome, chronic fatigue, pain, muscle weakness, dizziness, and brain fog are the short list of symptoms. My symptoms did not worsen until 2006, when I became unable to do most of the things I used to be able to.

I am very lucky to have a husband who works and receives decent health benefits. I did not apply for disability right away, because I could not believe I was really ill. “I’m not a disabled person!” is what I would think to myself. I just need to change my eating habits, add these supplements, and try acupuncture and a chiropractor. I really believed I would figure out how to get better myself, and then I would be able to work again.

Unfortunately, I did not know there was a time limit for applying for disability. I knew nothing about it. I thought if you worked your whole life, and became ill, that disability is there for you. What I didn’t know is that in order for me to be approved, I would’ve had to do it by December 2006. That is when I ran out of “credits.”

What would happen to me, if I decided to stay single my whole life, and this happened to me? How would I be able to afford medical benefits? I don’t know the answer to this question. After being a hard working American all of my life, I become ill, and then I can’t afford to take care of myself? Should I just be left to die if there is some medical emergency?

Being an eternal optimist, I still believe I will be completely well again someday. Over the past four years, I have improved a lot, and have a lot to be thankful for. I am aspiring to someday be able to work part time at a local bank or retail store. It may not seem like much of an aspiration. Someone asked me if I would be bored doing that kind of tedious labor. I know it’s hard for people to understand, but when you are unable to work for so long, if I were able to again, even at the simplest level, I would have so very much to be thankful for.

My hope for you is that you stay healthy, and able to continue being a hard-working American. I hope your family stays well, and that you continue to be fortunate and employed.
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Until tomorrow…
Linda

Day One

Today is the first day of my blog. I hope to be able to write every day, depending on how I’m feeling. Some of you may be wondering why I’ve decided to write a blog in the first place. Since I’ve been ill, I have never met another person with CFS. There are CFS conventions, but I don’t have the energy to travel. I looked for a local CFS support group, but the closest one is too far away to drive to. I thought about starting my own, but when I read all of the work it entails, I knew I didn’t have the time/energy to do it. So I decided to write a blog. It’s my way of connecting with people in my life who I am not able to see often, and to connect with those with CFS or other chronic illnesses. Having CFS is very isolating. It’s isolating because many friends and family members do not understand it. CFS sufferers are not often given the sympathy and support of someone who has cancer. It is isolating physically, because the person with CFS often has limited energy for visiting others or talking on the phone.

In case you are wondering, if you happen to find grammatical errors, I am not doing it on purpose. The intro I posted yesterday, I read three times before posting it. Through the brain fog, I don’t catch those kinds of errors like I used to. Oh well, it’s not like I am writing a novel. I learned to let go of perfection a long time ago!

After I posted my blog yesterday, I was feeling okay, just a little sore and stiff since waking up. As the day progressed though, I felt pretty dizzy and tired for the rest of the day. I am pretty sure the dizziness is caused by low blood pressure. I eat salty foods to try to help raise my blood volume, but it doesn’t always work. I can normally do some driving, but if I’m feeling dizzy, I stay home if I can. Driving while dizzy kind of feels like driving under the influence of something. So being dizzy yesterday, I didn’t run to the supermarket. I ended up making some pork on the BBQ and some Bisquick biscuits with no vegetables on the side. Even though I was feeling crappy, I still wanted to try to cook for my husband because he had to work yesterday. I feel guilty often for not being able to cook more and better meals for him. On a good stretch I had last year, I was cooking decent dinners about 6 days a week.

CFS symptoms and severity vary so much from person to person. I understand there are people with it who are bed ridden. I wake up every day thankful that I can get out of my bed and do something on most days. When I woke up this morning, before I got up out of bed I took my blood pressure. I’ve been doing it for the last week because I want to have some recent readings to give to my new doctor. My readings thankfully are not as low as they used to be. This morning my reading was 91 over 58. Kind of low considering your blood pressure is supposed to be at its highest in the morning. The cortisol levels in your blood make it rise, to help you get going in the morning. My doctors don’t get to see my lower numbers in the morning when I first get up. I usually see doctors in the afternoon, because I am usually less foggy brained then. With the white coat factor, my blood pressure is usually 110 over 70, which looks wonderful to them. I know I’m kind of going off on tangents today, I was talking about this morning. I felt pretty dizzy and foggy headed this morning. Everything I did this morning from brushing my teeth to making breakfast for my husband was very deliberate. On days like today, something that is normally an easy task that you’ve done so many times you could do it in your sleep, becomes this complex task. One in which every step takes thought and focus. It was also difficult to keep my brain focused. My husband asked me to get the plates out of the microwave. I turned around to help and asked, “Where are the plates?” There is nothing wrong with my hearing, and I am not disinterested in what he was saying. I was trying to level off a scoop of this energy enfusion drink without spilling it all over the place. So in trying my best to focus on that, I could not also focus on what he was saying. My lack of focus has to do with the low blood volume I have. If you do not have enough blood flowing to your brain, it makes it difficult for your brain to work correctly. When around other people, and my brain isn’t working quite right, I’ll tell them it’s a lack of blood flow to my brain. That usually makes them laugh. I’m not sure they understand that it’s true, but I take any opportunity I find to poke fun at myself that I can. It’s better than beating myself up for it. I did way too much of that in the past.

So now I’m upstairs on the computer, writing my blog. I was going to try to do some vacuuming since it’s been about 2 months since I’ve done it, but I’m still feeling dizzy. Yeah, I know that is gross, but my house is pretty large, and I haven’t been feeling well enough physically well enough to do it. I would have a cleaning company come in and do it, but we can’t afford that. Not having a sparkling, clean house is one of things I had to let go of. The dirt will still be there tommorow for me to vacuum if I am feeling up to it.

Well that’s all for today, I hope you enjoy the rest of your weekend. Thank you for reading.

Until tomorrow…
Linda

Welcome to my blog about my journey through CFS.

Hello Friends,

My name is Linda Marshall. I am 41 years old, and I have CFS. (Chronic Fatigue Syndrome) When I look back, I started having symptoms as far back as 2001, but it did not reach its worst point until July 2006. While my journey has its peaks and valleys, I am very thankful for the improvement I have seen over the last 4 years. The progress has been slow, but I continue to have hope that someday I will be completely well again. Today, I’ll give you a little of my story and tomorrow I will start my day to day blog.

I grew up having a very active lifestyle. When I was younger, I spent hours playing outside, and later joined a children’s theatre group. I spent hours rehearsing lines and dance numbers. As an adult, I was always busy. When I was studying in college, I was working full time while carrying a full load of courses, and also living on my own, helping to support my live in boyfriend at the time. I had a lot of energy. I loved going out with friends to parties, and dancing all night. Even later in life in my late 20s and early 30s, I was the type to rarely just sit down. I worked in high pressure, high energy software sales positions for a number of years. During that time in 2000 my husband and I achieved the dream of owning our own home. Since it was a new house, it had nothing but large tumbleweeds in the backyard. I was back there pulling them out by hand. I’d spent many hours happily working in our yard.

In 2001, I was laid off by for a software company due to “restructuring.” All of the inside sales positions were going to be located in Texas. Being laid off, no matter what the reason is a stressful thing, even if you wanted to leave anyway. It’s a little fuzzy to me right now, but I think I was depressed for awhile after it happened. Working for that company had been so stressful; it took years off of my life. I was determined to not to work in that dog eat dog industry again. Luckily, my husband‘s income was enough for us to continue to get by.
I became a consultant for Pampered Chef. When looking back, I know things were not physically normal for me, but we all have a funny thing called denial. It gives us reasons for the things we are experiencing, and allows us to continue on thinking what we are experiencing is normal for us. If you are not familiar with Pampered Chef, it is a company selling kitchen tools, stoneware, cookware, etc. As a consultant, I had shows in people homes. I had to pack up crates of products, some stoneware, cookware, and sometimes a table to people’s homes, set up a demonstration, and cook something in their homes in front of their audience of family and friends. Afterwards, you had to take product orders, clean all of the dishes/tools used, pack up the car, and drive home. This is when I remember having problems with my ability to focus my brain during presentations, muscle weakness during lugging around the products, and lack of energy afterwards. I guess luckily, I did not have back to back shows during the week. Just doing one was exhausting. But there were many women who did, and they seemed to have no problems handling it. At the time, I just made the excuse that I had been spending most of my hours in front of a computer at work, so I was a little out of shape. I did not continue with Pampered Chef for over a year because I was spending more on it than I was earning. J
It was not until I went to Veterinary Technology school in 2003, that I realized something was definitely wrong. I’ve always loved animals, and science, so I went back to school to be a Vet Tech. (Kind of like a nurse) I loved the classes, and did great on written tests, and projects. Actually working with animals is when I noticed problems. One of the things required of a Vet Tech is knowing how to properly restrain an animal using your hands, arms, and body. The muscle weakness I experienced gave me great difficulty in being able to hold the animals. It was a great struggle for me, and I often felt the animals were stronger than me, even if they were small. I also noticed problems with my motor functions, especially when using hypodermic needles. I knew what I needed to do to use them correctly, but I could not get my brain to tell my hands what to do. I also had issues with being able to “access” information I needed to do certain things like calculating dosages of drugs, or how to use certain machines. Even though I learned all of those things in class, and received A’s on my tests, there were just days when I could not remember what I learned. In my heart of hearts I knew there was something wrong, and I left school before completing the program. That was depressing. At this point even though I felt something wasn’t right, I still was in denial and did not seek answers from a doctor.
One morning in July 2006, I woke up at 6 AM with what felt like the beginnings of an upper respiratory infection, but I also had an extremely fast heartbeat and pressure in my chest. Sometimes if I’ve had an extreme dream of some sort, I can “talk” my heart rate back down to normal and go back to sleep. My heart rate was up and stayed up. So when a half hour went by and I woke my husband and told him I needed to go to the ER. They actually needed to use drugs to bring my heart rate down, and more drugs to bring it back up when my numbers tanked. I experienced many tests, and luckily nothing wrong was found with my heart. They kept me overnight for observation. Ever since this day, I feel like I blew a fuse. My blood pressure was low. 80 something over 50 something. (Without any drugs) I felt dizzy and weak most of the time. I was on the couch for about 2 weeks. I could use the bathroom and eat, but not more than that. I do remember there was a time when I took a shower sitting down because I was too weak and dizzy to stand. My arms were barely able to reach up to shampoo my hair.
After tests to rule out other illnesses, I was diagnosed with CFS. I have since spent many hours reading (and re-reading) books, articles, studies when I was able to. Trying to find the answers. Thinking the next supplement or regime I try will be the one to get me well. I have learned a lot, and I have improved greatly since I became ill, but it’s been slow progress. I have learned to manage my time, and how to listen to my body. I’ve found drugs and supplements that have helped. But every waking day I still don’t know how my day is going to be. If I wake up feeling pretty good, I never know how I’ll be feeling later on. I feel like my improvement hit a plateau a bit since this past November. There are no CFS specialists where I live, but found a few in driving distance. Two of them were “quacks” and while the third one seemed promising, they did not accept medical insurance. I just do not have the money to pay up front for treatments, and lack the energy to be dealing with all of that paperwork. I have been a subscriber to Prevention Magazine for some time, and by chance I looked at a flyer enclosed advertising a book about natural cures. In this ad, it mentioned a Dr. Teitlebaum having success with treating his CFS patients. I am feeling hopeful because I have finally found a specialist who I think can help me improve more using Dr. Teitlebaum’s SHINE protocol. I have to drive an hour and a half each way for each appointment, but I’m hoping it’s worth it. My appointment is on March 23th. Wish me luck!

Until tomorrow…
Linda